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Friday, April 01, 2011

5 Things I've Learned from My Autistic Son

If you’ve been reading the BookEnds blog for any length of time or have been following me on Twitter, you know by now that my 5-year-old son, Nicky, is autistic. Two and a half years ago Nicky was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), which is an Autism Spectrum Disorder. Tomorrow, April 2nd, is World Autism Awareness Day, and I wanted to take this opportunity to honor my son and shine a light on autism, while giving our blog readers some food for thought.

These are 5 lessons my son has taught me that I thought were worth passing along to you:

No room for melodrama — My son is pretty literal. He doesn’t get into moods unless something very concrete (like a loud noise or nasty cold) is irritating him. He doesn’t intentionally exaggerate or tell fibs. With Nicky, what you see is what you get. There’s no affectation.

Since Nicky’s diagnosis, I’ve found I’ve lost all tolerance for dramatics. I have no patience for “he said, she said.” No time for petty arguments. No energy for relationships that produce more work than support. And no room for the people that perpetuate all of that melodrama. None of that feels real to me.

And there’s certainly no point to melodrama in the online community either. I shake my head at blog trolls, Twitter wars, and jealous author rants. It’s a waste of energy. Energy that would be better spent on just about anything else — like writing.

Don’t compare yourself to others — One of the most unique, beautiful, but frustrating things about Autism Spectrum Disorders is that darn Spectrum! All children are affected by the disorder in different ways and at different levels. Some have trouble making eye contact with you, but can otherwise communicate appropriately. Others are highly intelligent, but have strange tics or self-stimulatory behaviors (flapping, jumping up and down) and don’t interact with peers. Then there are those that are completely nonverbal.

Every child in my son’s Kindergarten class has his/her own strengths and weaknesses. They each have their own unique challenges, which can make it very difficult for a teacher to find ways they can all be taught together. It’s pointless for me to compare my child and his abilities to another child in the class. And even MORE pointless for me to compare him to a typical child. I can only focus on Nicky’s individual needs and celebrate his own personal successes.

But then, none of us should be comparing ourselves to others. Certainly we can be inspired by the success of others, but there’s no point in obsessively comparing our work — or our lives, for that matter — to another’s.

It’s not about me — This is the one I struggle with most. I’m one of those people that loves trying to come up with the perfect gift for someone (Jessica’s even better at it than I am). I spend sleepless nights trying to think of what book will strike my mom’s fancy, what doll will make my daughter’s face light up, what day trip will create the most lasting family memories.

Well, I have to admit that Christmas and Nicky’s birthday always bring a little bit of a letdown for me. Nicky just doesn’t react to gifts and surprises like other children do. So when his eyes don’t light up and he doesn’t squeal with glee, a little piece of me mourns. But then I remember it’s not about me. Just because Nicky’s not able to give me the kind of feedback I crave doesn’t mean he’s not happy. Giving a gift should be about the receiver.

Keep expectations high — It’s hard to admit, but I definitely underestimate my son sometimes. I don’t always ask him about his day or engage in conversation about more abstract things, because I’ve tried before and been disappointed. But every now and then, he’ll surprise me. Just last night I stepped back and discovered for the first time that he could button up his pajamas by himself. I’m not always as patient as I should be and so I often just end up doing it for him. But these little steps forward are big celebrations at our house. If I keep my expectations low, my son will never have an opportunity to rise to them.

We often keep expectations for ourselves low too. Set your goals high. You just might surprise yourself.

Books can be transformative — One of my son’s strengths is reading. Ever since he was a toddler he’s loved letters, phonetics, and all kinds of books. Nicky has difficulty putting on his own shoes, but he’s reading above his grade level — and comprehending it.

In school, he has difficulty sitting still, makes strange sounds, and doesn’t focus during his lessons. But the teacher says that the one time of day that he sits still and really listens is during story time. If the teacher is holding up a book in front of him, he’s hooked. It’s the one part of his day I can get him to recall when he gets home.

Books definitely make Nicky’s world brighter. Mine too. So keep writing! You could be changing somebody’s world.

My son is highly functioning Asperger's and I have learned so much from him. When he is interested in a subject he has laser focus and I've learned that he will be fine. When he figures out what he wants to do he will go to it with gangbusters.cmr

Beautiful post, thanks for sharing :) The "keep expectations high" really resounded with me because we all have those people in our lives - children, siblings, spouses or whoever - that we get into the flow of just doing it ourselves and not giving the other person the opportunity.

I understand the non-affectionate very well. At one point my daughter would come to me for a kiss goodnight. She would kiss me on the cheek-which consisted of her just touching me with her lips. I can't say what made her suddenly start doing it, but it ended just as quickly. You take those moments and cherish them.

Kim,Thanks for sharing about your son. My 7 year old daughter, Grace, is autistic and developmentally delayed. She's nonverbal and developmentally around 18 months (can't feed or dress herself, still in diapers, etc.)

We adopted her from China 5 years ago not knowing all of her issues. The past 5 years have been some of the hardest and best of my life.

All four of my children teach me things, but Grace is my biggest teacher. She has taught me patience, both with myself (okay, especially with myself!) and others.

Most of all, she has shown me that joy isn't some mystical thing that floats down from heaven. We can make our own joy by choosing what we focus on. Do I dwell on the books I haven't published, or the dishes in my sink, or the fact that my daughter will never live on her own? No. Okay, some days I do dwell on those things! But most of the time I try to see how lucky I am that this little girl shares her life with me.

My autistic son is 14 years old. He is a challenge, but worth every second of it. We take one day at a time. My son has taken a liking to Shakespeare and acting, which seems contradictory. But he says that on stage, he can't see anybody and gets to be someone else. (He's playing Puck this year in a Shakespeare Troupe's production of A Mid-summer Night's Dream.) All this from a boy that the neurologist told us might never learn to talk.

this blog post was amazing. i am at a loss of words...i've taken a lot of psychology classes and done a lot of research on autism.

i think that just by reading this blogpost, you aren't giving yourself enough credit. remember having a kid of any sort is taxing, and not all of us have ANY patience at all. (personally, i don't ever want kids, so i have a dog and somedays i get so pissed off and just don't work with him at all). a real, living, breathing child takes amazing parenting, and it sounds like you are doing an awesome job.

I am a college professor and some of my favorite students are on the spectrum. I have so many students who seem to be throwing away an expensive education. My experiences with autism spectrum students has been the opposite: people working hard and doing really well.

What a wonderful post. You brought tears to my eyes with your insight.

I am a middle school counselor. I deal with melodrama daily...hourly. Our school also has a classroom of autistic children. They are my haven in the midst of chaos because, as you say, they are real. Bless them.

Thank you so much for this post! Your son sounds like an amazing young man!

My brother-in-law is low functioning, non verbal autistic. Even though I know caring for him comes with many challenges, the blessings we all receive from him are much greater. My favorite occasions are the glimpses into his intellegence - when he does something funny or lets us know he's much more in-tune with everything than we could ever imagine.

There are those who come into our lives for a purpose and if we are wise we allow them to help us see the world through their eyes, making life a little more special. It seems you and your son are doing a fine job of that for each other. Best wishes to you both.

Funny story. I recently had a 24 year old houseguest named Johanns. He'd been my gardener for a couple of years before he moved to San Antonio 8 months ago. At the age of 8, he was in a serious car accident that left him with extensive brain damage and a plate in his head, Now he's autistic to a degree.

He stutters, speaks in a monotone, smiles rarely, is blunt as hell, but always says Thank You. Lots of times when he does speak, he'll preface his sentences by saying, "My mother, she says that," like, "My mother, she says that when I get up in the morning I should make my bed."

A couple of weeks ago he called me up out the blue. Truthfully, I never thought I'd hear from him again. So I was thrilled. The conversation was punctuated by large gaps of silence. I filled most of those gaps in by asking him questions. Toward the end of the conversation, I casually mentioned that he was welcome to stay at the house whenever he was in town, since he still had family in York. He politely said Thank You and we hung up.

Next day, I get a call. "My mother, she says that we're coming to York. Can I stay with you?" I said absolutely, took down all the information and got the house ready for his visit.

Turns out, (as his mother tells me when she drops him off), that the day after Johanns had called me, she'd finally gotten her court date to settle up on some property near Harrisburg.

Anyway, the week passed quickly. I was astonished by how neat he kept his room. At some point, his laptop broke down and I ended up buying him an IPAD, since his birthday was near, then an ITOUCH, (which had been on his wish list) as an early Christmas present. He politely says thank you with nary a smile. Later he tells me he has a friend who can fix computers and he would have his laptop fixed and give it to his 19 year old sister.

The last night of his stay, we're talking in the kitchen with my daughter. He tells me how he met a friend his age in San Antonio. It was in church one day, and Johanns noticed a young man who was basically holding up the wall in Sunday School. So Johanns tells me, "Well, I asked him if he wanted to be friends so now every Friday night we play games at his house." That rare, but completely gorgeous smile crossed his face. I complimented his thoughtfulness a lot, but he just nodded, his smile fading.

Finally, I said, "I'm going up to bed now" blah, blah, blah. I get a glass of ice and ask my daughter as I rummage through the pantry. "Are we out of crackors, sweetie?"

Well, Johanns just busted out laughing. I mean the kind of laugh it's tough to get out of an adult these days much less an autistic young man who I'd never, ever heard laugh before. To top it off, my daughter's rolling on the floor laughing.

So I asked, "What's so funny, guys? I'm just looking for some crackors. Have you seen them?" Another big round of laughter ensues. Johanns entire face is lit up like a celestial star.

I'm fascinated by that, but at the same time I still don't get what they're laughing about. "Ok, guys, one last time. I'm. Looking. For. The. Crack. Ors. Crack. Ors."

Thanks so much for this post. I am mother to a son with several autistic spectrum "challenges" ranging from speech challenges to reading challenges to food challenges. We've been at one therapy or another since he could walk, but he is a sweet boy with an incredibly creative mind. I believe we were given these kids to teach us something valuable. Sounds like you've recognized the gifts your precious boy has to offer and he's lucky to have such a loving advocate!

Lovely post and reminder to be grateful for what's genuine in our immediate world. Your little boy is gorgeous, by the way. I'm curious if there is any subject he especially likes to read about?

Your thoughts that autistic people are not melodramatic has made me revise my diagnosis of my spouse's academic department. I've often thought the ways in which they interact were indicative of at the least Asperger's. But now I see that the constant melodrama is probably more indicative of mere neurosis and narcissism. To be avoided! Time is too short for unnecessary human drama (much better to read about it in a book!).

Kim, thank you so much for that beautiful and heartfelt post. As mom to an Asperger child, I know how hard it can be to voice all of the many different emotions we sometimes feel. Frustration plays a part, but can never be outweighed by the surprises, laughter, and genuine awe they bring into our lives.

We are the ones who are blessed, because for whatever reason, God chose to give those special and amazing people to us. And just see how much we've learned from them?

Go Blue!My PDD-NOS son will be 4 years old on the 4th. Love him to death. He's VERY into letters and numbers, and can read words I didn't know he knew. We actually write out words to help him learn new vocab. At times, I wish he could use all the words he knows to express himself, but he has ways of getting his point across when he needs to.

When he cries, it's so genuine, and when he laughs it's musical and heartfelt. You're right: no drama. Pure him.

Thank you for the lovely post, Kim. It echoed many of my thoughts as a parent to a child with special needs and unique abilities. My daughter is fourteen and we're full speed ahead into those teenage years!

Our favorite stories give comfort, humor, and a little advice to help us along!

I just happened to click on your blog through another one. It's amazing how many people know, or are touched, by someone on the spectrum. I have five boys, and the eldest has CP and PDD NOS. The fourth is also on the spectrum, but they are very different in their characteristics. Even in the same family, you can't compare!

They've both made tremendous progress, but they may never be fully independent. But your post reminded me to think big! Sometimes when you are so close to a problem, there is no honest perspective.

My grandson and niece have autism. They are two very different people. Alex didn't talk for the longest time, then when he did it was perfect. Gia has had all kinds of speech therapy and she still slurs words and such. But when I sit back and remember where we all started with them...they are miracles.

Fantastic post. I rarely comment just for that purpose, but this was worthy of an exception.

Over the years, I have worked with autistic students at different places on the spectrum, and your observations are so astute - one unifying characteristic among them is that if you give them the opportunity, they will always surprise you (in very good ways as well as interesting ones).

I could have written this post! I am there with you - especially with the expectations. There are some areas where we expect a lot from him and others where (from experience) we don't. Then he surprises the heck out of us and I end up feeling like a bad Mom for not giving him a chance.

Thank you for posting. Autism is something wonderful to celebrate. My 12 year old daughter is high functioning - she was diagnosed at 10yrs. Before then we were often lost on what to do. Now that we know it's a "different way of thinking" we have a wonderful, not as challenging, family life. She tells me she wants to write like me one day - her reading is well above her age too - I hope she gets the chance. Her mind is amazing.

Like Katharine, some of my best and most beautiful students have been autistic. One in particular was able to grasp literature that "normal" students were still stumbling over--another, though nonverbal, showed a wonderful creativity that he was believed to be incapable of. The naysayers were wrong--he was a highly creative child, and only needed gentle prompting to express it. I miss them both, and remember them very clearly.

Thank you for posting those lessons. Sometimes, us adults need a reality check and it seems children have a way of bringing that around. Thank you for my reality check, and a little more info about autism that I didn't know before.

Thanks (to you and your son) for reminding us about the important things in life. Children like your son bring everything into focus and proportion. Celebrate the small things and the differences -- that's what makes life great.

Kim, thank you for this post. My daughter also has PDD-NOS and no one ever knows what I'm talking about when it comes to her issues. Including former therapists and educators. It is difficult to explain that yes, they are on the autism spectrum but no, they are NOT what most people consider "autistic."

My little ninja has her own set of issues that are similar to but also nothing like anything anyone else goes through, because they are hers. It is wonderful to connect with another parent who can also say "Yeah, I'm not perfect and I don't do everything right, but I have a damn cool kid."

Kim,I follow a blog by a woman named Susan Rahaila who had two autistic sons, one about your Nick's age. She is so wise and as an educator I always nod my head and mentally high five her. You might enjoy her posts.You can find her at http://questioningautism.blogspot.com/Your child has his own special gifts and unfortunately we live in a world that values a very narrow range of gifts.

I also have an autistic son and many of the lessons your gorgeous little one has taught you, mine has taught me. He's now 14 and while life has not been easy through the middle school years, our next transition will be the toughest for me. He starts ninth grade and will be in a public high school next year.

He's worked hard to achieve the things he has and continues to teach me how to be a more temperate and patient mother. It's been a fantastic journey with him.

Kimmy sometimes God can use the most common things to teach us great lessons. You are very wise to step back and see what Nicky has taught you. Sometimes when we wish it were different, God gives us just what we really need. - Peace, Pastor Cindy

Having a special needs child has opened my eyes to a world I never known existed before. I've learned more about love, honesty and trust by voluntering my time with children such as your son and mine than I have in my entire life time.

Wonderful post. Living on the spectrum takes courage, compassion and an appreciation for the simple things. Oh, and to Mr. Anonymous, the diagnosis-doubter – seems to me the Common Sense Gene may have skipped a generation in your family.

Kim, coming in late, but what a gorgeous little boy you have, and how lucky for you to have each other. Every lesson you mention is a life-changer. Sort of like the whole motherhood thing! My best to you--I look forward to seeing you in NY later this summer.

Simple, yet profound. I am a mother of two unique healthy children. I am overwhelmed at times, but am always grateful for 'our normalcy' even if no one else understands us. Your comments about not having the energy for the drama rings so true. Kudos to you for realizing this and passing it on. I needed to be reminded of the truth in that. Bless you and yours.

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